Cervical cancer is the leading cause of death in African women, with an estimated 119,284 new cases in 2018 and an estimated 81,687 deaths in that year1,2. According to GLOBOCAN (2018) estimates, African women have the highest cancer incidence when compared to other continents (139.6 per 100,000), and they experience the highest mortality (94.1 per 100,000)3. High mortality rates are primarily due to limited access to screening services and late presentation with diagnosis at advanced stages of the disease 4. While studies have evaluated perceptions and knowledge about cervical cancer, few interventions have utilized participatory approaches to understand and address this disease burden in African communities.
For the purposes of this review, community engaged research is defined broadly as “research efforts that include community members in the development of a research question, interpretation of study results, and/ or implementation of research interventions or findings.”5 Community based participatory research (CBPR), a well-known practice of community engagement, is a method for equal community engagement in the research process. The goal of this process is that research is driven by the needs of the community and that research findings benefit the community at the center of the research effort, resulting in translation of research to practice, and sustainability of research efforts 6. The literature supports that underrepresented and underserved populations experience health disparities, and few strategies have been developed to eliminate these disparities 7,8. CBPR is one tool that can be used within community settings to address disparities faced by the community 9.
CBPR has many strengths, including that knowledge generated in the course of the study is relevant and useful to the community, that existing distrust of research can be replaced with trusting collaborative relationships between the community and researchers, and research findings are more likely to be translated into practice within the community6. However, the basis of community engaged research is that there is a relationship between the community members and the researcher that is intentionally built and maintained – sometimes even after the completion of the research project 6 – making participatory research challenging when that relationship does not exist. Given the significant burden of cervical cancer on communities in Sub-Saharan Africa and the growing disparity in cervical cancer incidence between high income and low- and middle-income countries, it is extremely important to understand the ways that community engaged research practices have been used to address concerns about cervical cancer in at-risk communities in Sub-Saharan Africa.
There is evidence in the literature showing how CBPR has been used to increase knowledge about cancer screening in underserved populations. One study focused on increasing awareness about prostate cancer in African American men in Buffalo, New York. By developing community and institutional relationships, the researchers were able to recruit and educate men in this population about the importance of prostate cancer screening and made access to screening available for those who were interested.10 Another study focused on determining cervical cancer screening knowledge and correlates of cancer screening compliance among Haitian and Cuban immigrants to the United States living in Miami, Florida. These researchers employed CBPR because these communities are often stigmatized and are at high risk for cervical cancer due to their limited access to screening services. In collaboration with community health workers, the researchers were able to quantify the knowledge that these community members had about cervical cancer and HPV, enabling them to develop targeted interventions to serve the local Haitian and Cuban immigrant populations.11 These examples indicate that CBPR has been used to improve access to screening in various populations in the United States, and highlights this method’s strengths at reaching medically underserved communities and addressing significant health disparities.
We will conduct a scoping review of the literature in order to: 1) highlight community engagement research efforts in the work of cervical cancer prevention and control in Sub-Saharan Africa (SSA), 2) describe the participatory approaches that have been employed to improve the effectiveness of cervical cancer prevention and control efforts in Sub-Saharan African communities, and 3) to determine best practices for community engagement in cervical cancer prevention and control. To our knowledge this is the first review that will evaluate cervical cancer prevention and control efforts from the lens of community engagement as an effective method of addressing health disparities in SSA.